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Friday, 12 May 2017

Why? Just Why?

It's one thing to be told you have a disease that is not yet fully understood, while doctors do their best to seek out treatments. It is quite another thing to be told your life-altering illness is only a self-inflicted burn-out, and that you just need to take more exercise and think more positively. I joke not. Many patients report this type of attitude from their medical professionals.

The problem is this: NICE guidelines recommend Graded Exercise Therapy & Cognitive Behaviour Therapy as the best available treatments for "CFS/ME". Some doctors interpret such advice as: "Get a move on!" and "Stop dwelling on things!"Do these doctors not realise that ME can be serious? Indeed, so serious that it can render the sufferer helpless and in a an enduring state of physical misery? Do these doctors not recognise that exertion can make the health of fragile patients plummet? Do they not notice?

If not, why not? The ME community has been saying for years that exertion harms their health - sometimes permanently. Yet still the NICE recommendation for exercise remains. And the newly ill are still given advice that could cause them long term disability. And time goes on and NICE guidelines are still not changed.

We are told the guidelines will be looked at in 2017 to see if they need to be reviewed, but there appears to be no urgency to this process. We also have no reassurance that the experts being consulted on the decision are cognisant of the harms of exercise for ME. Are these reviewers taking new research seriously? Are they prepared to ditch evidence from trials that fail to stand up to scientific scrutiny? And if so, why are changes happening so slowly? Now, here we are in the month of May again. Still trying to "raise awareness", still blogging, still protesting, and still campaigning. Yet little has changed for patients in consulting rooms across the country.

Why is that? Why? Just Why?

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PS I read somewhere recently:If you want to change a person's established view point, that reasoned arguments and referenced literature have less effect than simple questions. So I have chosen not to expand this post with detail, but simply to ask the question "Why?".

4 comments:

Why indeed Sally! I've lived in a state of shock since getting ill in 1999, so many questions and no satisfactory answers. My 'why' thoughts, progressed to ' this can't be right' which lead to simplistic thinking that if I just told the truth of my horrendous experience of ME and that of others, then our questions would be answered. Nearly two decades later, I'm still asking the same questions after investing 8 years of my life meeting with influential people who could and SHOULD have provided some answers. Sympathetic nods and promises of change, have had zero effect on the actual patient going into a surgery begging for help and understanding. I remain puzzled and bewildered!

Indeed Joan. What seems like a solid reasoned argument to us (and haven't we both worked hard on charity literature to get just the right words!) has little effect on changing perceptions. And even when we find a few who comprehend what we are saying there is still insufficient momentum to change the direction of the tide. How long have patients been saying "Soon things will change..." ??

Why don't advocates focus on the physiological abnormalities that can be easily demonstrated? Sure the wrong exercise is extremely harmful BUT heart rate monitoring illustrates the severely abnormal heart rate response to exertion. I ask why do advocates keep banging on about NO EXERCISE and all exercise is BAD? No-one is listening. Yes our signs and symptoms are similar to burn out- the question is WHY? Why? What is harmful exercise, activity? We feel better when we rest, so we rest- why? How can we tell what is too much or what is enough rest? Too much exercise raises our resting heart rates, why? If we monitor and our resting heart rate increases have we done too much exercise? Why aren't researchers using resting heart rate, heart rate variability, orthostatic rate data to find out how to best manage this disease? Why aren't advocates asking questions? What are advocates waiting for....the science is real, wearable heart rate monitors are relatively cheap, data sharing is easy...Why does the polar flow app tell me that I have been running all day when I've not left my bed? Why? Science please not dogma. How can I best manage my rest/activity/exercise?

I agree. Other posts on here will demonstrate that I support HR monitoring. However ME advocates need to keep talking about the harms of exercise because that is what NICE guidelines throw at us. I think lots of advocates are doing all the things that you are asking about. We need research funding targeted at these questions.